About Me

I am a girl who fell in love, got married and wanted to have a regular ol' ordinary family. What I ended up getting was everything but.
This blog chronicles our journey as a family who was blessed with a very special child.
From the day we found out that she had only a 5% chance of living to the present, life has been a true roller coaster of emotions. And most surprisingly, more rewarding than I ever thought possible.
Click here to contact me.

The Harlie Fund

Due to the requests of many caring people, our family set up a legal trust fund, "THE HARLIE FUND" to help with Harlie's care. You may click here for more information or click on the donate button above.

The Harlie Crew

We invite each fan of Harlie to join the following initial crew members and commit to make a monthly contribution to The Harlie Fund.

With Christy's willingness to share, we have worried about, prayed for and rejoiced in the accomplishments of a remarkable girl. The members of The Harlie Crew together show their support by contributing monthly. If you would like to join us, please call Bill Jeffries at (804) 288-1672.

Saturday, August 25, 2012

It is now Saturday morning and overall, Harlie is doing well. She looks better than I expected, so that's a pleasant surprise.

I'm having a hard time organizing my thoughts.... let me just go back to last night. We were able to see her around 7ish last night. Before that the surgeons came to talk to us about how the surgery went. I wish I could have written this last night, when all the information was fresh and clear. But, I was way too tired to do that.

Here's what I remember:

She did well through the surgery (heart and lung-wise).

Her jaw was not stable the way it was. The previous bone graft on her right side was only connected to her own bone by scar tissue. Her oral surgeon said that they had to just remove it and start over.

They ended up having to make an incision from one side of her jaw to the other. The left side of her jaw had something that was preventing them from aligning her jaw - I can't remember - but it was like scar tissue or ligaments or something. Step one in the surgery was for the oral surgeon to line her teeth up in the desired position - then they put the bone graft in the voided space. But, when the oral surgeon went to align her teeth, her jaw just didn't move they way they needed to. So, that's why they had to make a larger incision than planned.

The micro surgeon was going to revise her scar on the right side from the previous bone graft (it was pretty rough) but he said that they pulled her jaw out so far that her skin is really stretched - so there wasn't enough skin available to do it now. She will have to have several more surgeries - so it's not a big deal. There will be plenty of opportunities in the future (way to be positive, right?!).

They used screws to attach the bone graft. Her oral surgeon said that they often end up poking out after a while (that happened after both of her previous grafts). So, that might happen again and can be fixed during another surgery.

Her micro surgeon said that they didn't really attach the bone at the joint. They want that to move so she can open her mouth. Basically they had to create a new TMJ (temporomandibular joint). And a risk is that the bone will grow over and prevent her jaw from opening. So, they will want her to open her mouth often to keep everything moving.

Since her skin was pulled so far forward, he said that she would probably have a hard time getting her lips together.

Her teeth were a mess - as in the way they were trying to grow. She had so little bone that they were coming in in all directions. The left bottom teeth are growing to the left instead of to the top like normal. I think he said the bottom teeth on the right are growing to the right side instead of the top. And there was a tooth in the bottom front that was growing sideways as well. So, they removed that one. He said that this surgery should help give the orthodontist a base on which to work in the future. I think she'll be lucky if she has any of her own teeth when she gets older.

We have no idea when we're going to know if this surgery was a success as far as decannulation goes (being able to get the trach out). While that was our ultimate goal, it sounds like all of this was necessary regardless and that decannulation will be a bonus, really. It's just way too early to tell and there's a lot of healing that needs to happen - and time that needs to pass - before we can see any results. But there's a lot of hope in all of us - and we are choosing to continue to think positively.

Her left eye closure went well. I'm anxious to see how she's going to look after all the swelling goes down. I suppose that goes without saying, huh?

Her leg graft went fine. She's in a hard splint now. But she will be casted in a few days and will remain in a cast for a few weeks. It will be up to her to tell us when she's ready to weight bear and start walking again.

That's all I can remember for now. I am having a hard time trying NOT to worry about her future when it comes to her jaw and how it's going to function and look in the long term. It just sounds like it was/is a mess. Will she ever be able to eat a chocolate chip cookie? Not that oral eating is everything in life - but it just makes me sad to think of a life without it.

After they got her settled, we were allowed to see her.

Immediately post-op.

How cute is her little leg in a splint? It will be casted in few days.

Lots of suctioning post-op. I had to help the nurse because she was already pretty feisty.

Overall, I think she looks pretty good. But no matter what - it is very difficult to see your child's face change like that. And it's difficult to wait through the swelling and healing to see her again. Once I see her laughing again, my worries of the future will go to the back of my mind and her current happiness will keep me in the present.

After she was settled in for the night, Tom and I left the hospital and walked the mile back towards the hotel. We were so freaking tired!!! It was such a long day and it didn't hit me until I could relax a little. We stopped to eat a late dinner at a Thai place right around the corner from the hotel.

Yesterday Harlie received a package from the Life is Good corporate office (which is based here). Thanks to Lynda Reider (aka We Heart Harlie on FB) they were made aware of Harlie's surgery and they sent over an awesome care package for her.

There's a backpack, t-shirt, hoodie, coloring book, socks and a stuffed dog. The most touching was the fact that the employees signed the card with sweet messages of strength and good vibes. Seriously??? How awesome is that?!!

I have always loved Life is Good and the message of optimism... this is my Life is Good hat from my last trip here...

Powered by Optimism

But now I love them even MORE!

And I just can't begin to thank you for all your comments, prayers, messages, texts, and pictures of We Heart Harlie support. It has been so overwhelming to see and feel the love!! Thank you!!!

I have a ton more to write, but will get this done for now. I'll work on what's going on today, and provide new pics in a little bit. But, at least this will get you some info until I can finish the next update.

4 comments:

Christy, my heart breaks for you that nothing is an easy fix and there are so many more surgeries in your future. This is a marathon not a sprint that's for sure. You're such a great mom. Harlie is such a fighter that I know she is going to be okay no matter what. There will be challenges but she will be okay. I am very much looking forward to some pictures after she's healed some. Much love. XOXOXO.

We are hoping and praying that all will work itself out and she will heal beautifully. She has fantastic parents and so much love behind her. She is such an awesome girl and quite a fighter. I kept checking Harlie's page to find out how all is going and I am so glad to be reading such positive thoughts. Way to go Harlie!!!!!!! All our love and prayers from Pittsburgh, Sue and Ron

Murphy

Murphy is 13 and is in eighth grade. He is constantly making us laugh with his crazy sense of humor and wonderful imagination. He is a great big brother and adjusted with no problems to this role. He has been an easy kid to raise from the get-go (despite the fact he entered this world 5 weeks ahead of schedule).

Harlie Caroline

Harlie is 10 and is in fourth grade. She has Goldenhar Syndrome, VACTERL Association and a lung defect that required the removal of 2 lobes on the right side. After over 50 surgeries (4 of them open heart), she is remarkably age appropriate. She is the sweetest, funniest little girl I've ever met. You can't help but fall in love with her.

Cooper

Cooper is 8 and is in third grade. He is a very talkative, high energy and affectionate little guy. He is all boy and he is a very funny kid. We are so lucky to have him!

Rooney

Rooney was born on February 5, 2012. He has been a wonderful addition to our family. He is such a great little dog and I just can't imagine life without him now! I love him so much!!!